[mrsgooseParticipant]

I was 2 weeks, then 6 weeks. Hope your relative is progressing. Its very slow and steady.

Marg

 

 

[iangParticipant]

My first day unit (i.e. outpatient) appointment was 3 days after discharge, then they were weekly for 3 weeks, then mostly fortnightly till day 100. So the procedure obviously varies quite a lot from one unit to another.

My PICC line was removed at the 2nd appointment after checking my blood results. The appointments consisted of having bloods taken, occasionally providing a urine sample, sometimes seeing the specialist care nurse, replenishing meds if needed, seeing a doctor if needed (twice), waiting for blood results. I usually asked for and got a copy of the results.

Re wearing a mask – I asked about this before I was discharged and I was told it isn’t necessary.

Ian

[alanjamesbyrneParticipant]

Hi all back from oncoligest today ,I have to have calcium drip tomorrow,then on Thursday I have to have a longline insertion fitted to my chest . Ready for stem cell harvest ,next Monday I have the chemo which will be on a day visit,and I start the GCSF injections on tues ,back again on 16 th for stem cell harvest,,then a small break till the 24th for oncoligest,I am assuming they will be doing tests inbetween,and then if all is well stem cell replacement on the 3 rd March ,they gave me a book on procedures of my treatment,but it seems it’s all changed some what ,I can’t understand ,I have chemo and come home ,they say it is a large dose ,and I might have to be drip fed the first week ,how are they going to do that if I am at home ,also this chemo will kill my immune system,so again I’m at home with visits to hospital most days,I don’t go into isolation until I have stem cell replacement,which as I say is the 3rd March all beig well,so I have to go 3 weeks with a very lowered immune system,surely I’m going to catch all sorts of things ,I know it effects everybody differently,and hope I sail through it all ,but it does worry me if I catch something ,oh well what will be will be,onwards and upwards ,Alan

[nickyx1Participant]

Hi Alan

like yourself I’m booked in to have my stem cell transplant on the 23rd of February. I am getting really nervous about it I’ve been told that I will be in hospital to have the intense chemo and then the next day I have my stem cells back. If the next day I am ok with no temperature I can go home . It is worrying as by the second week I will have basically no immune system. I hope you get on ok having your line fitted and having your stem cells taken,don’t worry about the injections too much I found them really easy to do and didn’t get too much bone pain,but still got enough to have 4 transplants if I need them. All the best and let me know how you got on with your treatment 🙂

nicky X

[alanjamesbyrneParticipant]

Hi and thank you Nicky ,I wish you well on your treatment,and hope you have a speedy recovery,I am still a bit scared ,it’s all about the unknown ,I’ve been fine with all of it so far apart from bone marrow biopsy ,which bleeding hurts,and the other bit I hate is my taste buds ,which go to pieces when I am on chemo ,everything I eat or drink tastes terrible ,catching a virus is what frightens me at the moment,any good luck ,onwards and upwards

 

[CarolsymonsParticipant]

Hi
Stay home as much as you can after you have the chemo for stem cell collection as it will damage your immune system. Even more so with the melphalan before transplant. SCT is not too bad if you can manage to avoid infections in my opinion.

Carol

[alanjamesbyrneParticipant]

I had a few words with the oncoligest today ,when I saw him last week he said I would have the big dose of chemo next Monday ,and then stem cell harvest a week later ,and then two weeks later stem cell replacement,I thought it does not sound right,my sister agreed with me that was what he said ,turns outi have a medium dose of chemo Monday ,and the big dose in a few weeks time ,inspired or what

[nickyx1Participant]

Hi alan

thats exactly what I’ve had. I had medium dose of chemo  then had to have injections for a week to make stem cells spill out into blood which were then harvested. I don’t know if you have hair but it’s that lot of chemo that made mine start falling out. I asked my niece who is a hairdresses to clip mine off on Monday as it was just sliding off. I felt better afterwards as I had taken control over what was happening.I have an appointment to go on nebuliser to help prevent pneumonia on weds. Then heavy dose chemo on 23rd,I am crapping myself!!!!!!!!!!!! Good luck for Monday I will be thinking of you. All the best

nicky

[Ang287Participant]

Hi everyone. This time last year my husband had had his Melphalan (heavy dose of chemo on Thursday last week and then the stem cells returned on the Friday. As we live near the hospital he was told he could come home until he started feeling a bit poorly so he stayed hom until the Tuesday and he was then in hospital for just over 2 weeks. After stem cells returned he came home smelling of cabbage for a day or two and we were later told this is normal – it’s something to do with the preservative that the stem cells are kept in. He went into hospital the day before my birthday on 10th Feb and it was a miserable time for us both but he never got the sore throat and his hair didn’t start falling out until the 2nd week as an in-patient. He has very fine hair anyway so it was not too noticeable and that’s when he shaved it off. He felt weak for a few months when home and he was offered voluntary redundancy as work restructured his job while he as in hospital and then wanted him to attend for interveiew 9 days into recovering at home for a new restructured teaching job:( He achieved full stringent remission so it is all worth it and he has now been in remission for a year. In a couple of hours we are off to Benidorm with our family to celebrate my birthday and his year’s remission. We send our best wishes to anyone going through this now as we know how you must be feeling.
Best wishes from Angela and Graham x

[alanjamesbyrneParticipant]

Hi Angela and graham I am very pleased for you and graham have a great birthday and holiday ,can’t wait until I can have a holiday again ,getting fed up with being prodded and poked about ,I’m lucky that I don’t have much hair anyway ,and have shaved my head for a few years now ,start chemo priming tomorrow and the injections and  other drugs Tuesday  stem cell havest on the 16th ,back to oncoligy on the 24th and if every thing is ok the big dose of chemo and stem cell replacement on the 3rd March had a stent fitted last week and getting used to that now ,at least on chemo and stem cell ,I don’t have to have injections now as I have all this new plumbing ,lol,so I am now looking forward to June when hopefully I will be getting back to normal ,and can get get away for a holiday with my wife and dog ,onwards and upwards ,Alan

[nickyx1Participant]

Hi Angela and graham

i am really happy to hear how your husbands transplant went and to hear such good news about the years remission.

hope you have a really good holiday you deserve it having coped with all this treatment the past year 🙂 it makes me feel more positive about my transplant and chemo which is on the 23rd of feb,they delayed mine for a week so I could enjoy my birthday on the 17th. It really helps to know that things do improve and hopefully I will soon be jetting off with my boys age 16 and 13 next year. I wish you a great holiday and many more years of remission.

from Nicky x

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